Development of a trial of preventative treatments for those at risk of rheumatoid arthritis

Patient and Public Involvement and Engagement (PPIE) case study

Aim

We aimed to develop a trial design for evaluating preventative interventions for people at risk of rheumatoid arthritis through the consultation of a Public Advisory Group.

Methods

We used online meetings, emails and a feedback form to interact with the 25 public contributors involved.

Involvement included

We involved public contributors in:

• developing grant application
• developing an online feedback form
• giving feedback on trial design issues
• designing a study of patient treatment preferences
• developing lay summary, preparation of PPI plans and role description

Best practice

Public contributors noted:

• an inclusive environment where they felt listened to and respected by the researchers
• clear emails and adequate notice were received
• researchers showed a genuine interest and motivation to improve the quality of PPIE in research
• received prompt feedback on impact of contributions from public contributors

Impact of PPIE

• Public contributors advised on the selection of outcome measures and recruitment of patient groups.
• They informed consent procedures for the trial which have been incorporated into the trial protocol.
• They suggested undertaking an additional treatment preference study which is being delivered alongside the trial.
• Manuscript was submitted to a scientific journal with 12 PPI co-authors.

Download visual summary (PDF)